Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study.

BACKGROUND: Shared decision-making provides an approach to discuss advance care planning in a participative and informed manner, embodying the principles of person-centered care. A number of guided approaches to achieve shared decision-making already exist, such as the three-talk model. However, it is uncertain whether daily practice methods in nursing home wards for persons with dementia comply with the underpinnings of this model. It is also uncertain whether professionals consider shared decision-making to be important in this context, and whether they perceive themselves sufficiently competent to practice this approach frequently. METHODS: The study has a cross-sectional design, with 65 wards (46 Belgian nursing homes) participating in the study. We compared nursing home professionals' and residents' perspectives on the level of shared decision-making during advance care planning conversations with ratings from external raters. Residents and professionals rated the level of shared decision-making by means of a questionnaire, which included the topic of the conversation. External raters assessed audio recordings of the conversations. Professionals filled in an additional self-report questionnaire on the importance of shared decision-making, their competence in practicing the approach, and with what frequency. RESULTS: At ward level, professionals and residents rated the average achieved level of shared decision-making 71.53/100 (σ = 16.09) and 81.11/100 (σ = 19.18) respectively. Meanwhile, raters gave average scores of 26.97/100 (σ = 10.45). Only 23.8% of residents referred to advance care planning as the topic of the conversation. Professionals considered shared decision-making to be important (x̄=4.48/5, σ = 0.26). This result contrasted significantly with the frequency (x̄=3.48/5, σ = 0.51) and competence (x̄=3.76/5, σ = 0.27) with which these skills were practiced (P < 0.001). CONCLUSIONS: Residents with dementia are grateful when involved in discussing their care, but find it difficult to report what is discussed during these conversations. Receiving more information about advance care planning could provide them with the knowledge needed to prepare for such a conversation. External raters observe a discrepancy between the three-talk model and daily practice methods. Training programs should focus on providing professionals with better knowledge of and skills for shared decision-making. They should also promote team-based collaboration to increase the level of person-centered care in nursing home wards for persons with dementia.

'We DECide optimized' - training nursing home staff in shared decision-making skills for advance care planning conversations in dementia care: protocol of a pretest-posttest cluster randomized trial.

BACKGROUND: Due to the gradual loss of function, it is crucial for persons with dementia to discuss advance care planning in due course. However, nursing home staff, residents and their families feel uncomfortable to start this type of conversation, resulting in unknown (care) preferences. 'We DECide optimized' will provide tools to nursing home staff for discussing advance care planning. The primary objective is to enhance the level of shared decision-making in advance care planning conversations. We hypothesize that the training will enhance the perception of the importance, competence and frequency in which participants engage in advance care planning conversations. The secondary objective is to assess barriers and facilitators in the implementation of advance care planning policies at the ward level. METHODS: 'We DECide optimized' will consist of two four-hour workshops and a homework assignment between sessions. Training components will include information on advance care planning and shared decision-making, role-play exercises and group discussions on implementation barriers at the ward level. Participating wards will receive supporting materials to stimulate residents and their families to initiate conversations. The study uses a cluster randomized controlled design, with 65 Flemish nursing home wards taking part (311 staff members). Data will be collected through a pretest-posttest model, with measurements up to 9 months after training. The RE-AIM framework will be used to evaluate the effectiveness of the implementation. Quantitative and qualitative data at the clinical, organizational and resident level will be collected. DISCUSSION: This study describes a hands-on, in-depth and multi-level training approach to improve shared decision-making in advance care planning conversations. By providing tools to ward staff, engaging the management and informing residents and their families, 'We DECide optimized' aims to decrease evidence-based barriers and to provide all stakeholders with incentives to engage in conversations about (care) preferences in an informative and participatory manner.

Advance care planning for nursing home residents with dementia: policy vs. practice.

AIMS: The aims of this study were: to evaluate the advance care planning policy for people with dementia in nursing homes; to gain insight in the involvement of residents with dementia and their families in advance care planning, and in the relationship between the policy and the actual practice of advance care planning. BACKGROUND: Through advance care planning, nursing home residents with dementia are involved in care decisions, anticipating their reduced decision-making capacity. However, advance care planning is rarely realized for this group. Prevalence and outcomes have been researched, but hardly any research has focused on the involvement of residents/families in advance care planning. DESIGN: Observational cross-sectional study in 20 nursing homes. METHODS: The ACP audit assessed the views of the nursing homes' staff on the advance care planning policy. In addition, individual conversations were analysed with 'ACP criteria' (realization of advance care planning) and the 'OPTION' instrument (involvement of residents/families). DATA COLLECTION: June 2013-September 2013. RESULTS: Nursing homes generally met three quarters of the pre-defined criteria for advance care planning policy. In almost half of the conversations, advance care planning was explained and discussed substantively. Generally, healthcare professionals only managed to involve residents/families on a baseline skill level. There were no statistically significant correlations between policy and practice. CONCLUSION: The evaluations of the policy were promising, but the actual practice needs improvement. Future assessment of both policy and practice is recommended. Further research should focus on communication interventions for implementing advance care planning in the daily practice.

Study protocol for 'we DECide': implementation of advance care planning for nursing home residents with dementia.

AIM: To evaluate the effects of 'we DECide', an educational intervention for nursing home staff on shared decision-making in the context of advance care planning for residents with dementia. BACKGROUND: Advance care planning (preparing care choices for when persons no longer have decision-making capacity) is of utmost importance for nursing home residents with dementia, but is mostly not realized for this group. Advance care planning consists of discussing care choices and making decisions and corresponds to shared decision-making (the involvement of persons and their families in care and treatment decisions). DESIGN: This quasi-experimental pre-test-post-test study is conducted in 19 nursing homes (Belgium). Participants are nursing home staff. METHODS: 'We DECide' focuses on three crucial moments for discussing advance care planning: the time of admission, crisis situations and everyday conversations. The 'ACP-audit' assesses participants' views on the organization of advance care planning (organizational level), the 'OPTION scale' evaluates the degree of shared decision-making in individual conversations (clinical level) and the 'IFC-SDM Questionnaire' assesses participants' views on Importance, Frequency and Competence of realizing shared decision-making (clinical level). (Project funded: July 2010). DISCUSSION: The study hypothesis is that 'we DECide' results in a higher realization of shared decision-making in individual conversations on advance care planning. A better implementation of advance care planning will lead to a higher quality of end-of-life care and more person-centred care. We believe our study will be of interest to researchers and to professional nursing home caregivers and policy-makers.

Using ePROMs for follow-up after palliative radiotherapy: An exploratory study with patients and health care providers.

OBJECTIVES: Patients treated with palliative radiotherapy may experience symptoms decreasing their quality of life. Electronic patient-reported outcome measures (ePROMs) could provide an opportunity to follow-up patients after treatment. METHODS: A mixed-method study was performed using self-constructed questionnaires, focus groups and interviews with patients and health care professionals (HCP). A qualitative approach was used to code the data. RESULTS: Forty-two patients, 21 radiation-oncologists, 15 general practitioners (GPs) and 24 home-care nurses completed a questionnaire. Ten patients, 6 radiation-oncologists, 14 GPs and 5 nurses were interviewed or participated in a focus group. Although patients and HCP are satisfied with current care, they believe ePROMs could improve follow-up, communication, continuity of care and self-management of symptoms. An easy to use, versatile ePROM platform seems to be important for successful implementation. Self-care tips and contact information should be added to relevant ePROM-questions, on both physical and psychological symptoms. CONCLUSION: Patients and HCP agree that ePROMs could improve systematical clinical follow-up after palliative radiotherapy, with self-management support being the primary objective of such a system. Practice implications ePROMs after palliative radiotherapy seem feasible, the exact patient population that could benefit the most will need to be explored further; as the palliative population is very diverse.

Improving shared decision-making in advance care planning: Implementation of a cluster randomized staff intervention in dementia care.

OBJECTIVE: Increasing staff engagement level of shared decision-making in advance care planning for persons with dementia in nursing homes. Perceived importance, competence and frequency of staff members applying shared decision-making were measured. Additionally, facilitators and barriers in the implementation process were described. METHODS: In this pretest-posttest cluster randomized trial, 311 staff members from 65 Belgian nursing home wards participated. Key components of the intervention were knowledge on shared decision-making, role-play exercises and internal policies on advance care planning. Audio recordings of advance care planning conversations between residents, families and staff were compared before and after the intervention. Participants filled in questionnaires and provided feedback. RESULTS: Wards demonstrated a higher level of shared decision-making after the intervention (p < 0.001) while time spent on the conversations did not increase. This effect persisted at 6 months follow-up (p < 0.001). Participants perceived shared decision-making as more important (p = 0.031) and felt more competent (p = 0.010), though frequency of use did not change (p = 0.201). High staff turnover and difficult co-operation with GP's were barriers. CONCLUSION: Nursing home staff benefits from this training in shared decision-making. PRACTICE IMPLICATIONS: Learning shared decision-making in advance care planning for persons with dementia is possible and sustainable in the time-constricted context of nursing homes.

Integrated Palliative Care for Nursing Home Residents: Exploring the Challenges in the Collaboration between Nursing Homes, Home Care and Hospitals.

INTRODUCTION: Nursing home residents are a vulnerable and frail segment of the population, characterised by their complex and palliative care needs. To ensure an integrated approach to palliative care for this target group, working on a collaborative basis with multiple providers across organisational boundaries is necessary. Considering that coordinators of palliative networks support and coordinate collaboration, the research question is: 'how do network coordinators perceive the process of collaboration between organisations in Flemish palliative networks?' METHODS: A dual-phase sequential mixed-methods design was applied. First, the coordinators of each of the fifteen palliative networks in Flanders completed a survey in which they evaluated ten aspects of collaboration for two types of cooperation: between nursing homes and home care, and between nursing homes and hospitals. Next, the survey results thus obtained were discussed to improve understanding in a focus group composed of the above coordinators, and which was analysed on the basis of content analysis. RESULTS: In both forms of cooperation, the 'formalisation' and 'governance' were the aspects that yielded the lowest mean scores. The coordinators in the focus group expressed a need for more formalised interaction among organisations with regard to palliative care, the establishment of formal channels of communication and the exchange of information, as well as the development of shared leadership. CONCLUSIONS: The perspectives of the coordinators on inter-organisational collaboration are a valuable starting point for interventions directed at the stronger integration of palliative care for residents of long term-care facilities.

Advance care planning for nursing home residents with dementia: Influence of 'we DECide' on policy and practice.

OBJECTIVES: (1) To pilot 'we DECide' in terms of influence on advance care planning policy and practice in nursing home dementia care units. (2) To investigate barriers and facilitators for implementing 'we DECide'. METHODS: This was a pre-test-post-test study in 18 nursing homes. Measurements included: compliance with best practice of advance care planning policy (ACP-audit); advance care planning practice (ACP criteria: degree to which advance care planning was discussed, and OPTION scale: degree of involvement of residents and families in conversations). RESULTS: Advance care planning policy was significantly more compliant with best practice after 'we DECide'; policy in the control group was not. Advance care planning was not discussed more frequently, nor were residents and families involved to a higher degree in conversations after 'we DECide'. Barriers to realizing advance care planning included staff's limited responsibilities; facilitators included support by management staff, and involvement of the whole organization. CONCLUSION: 'We DECide' had a positive influence on advance care planning policy. Daily practice, however, did not change. Future studies should pay more attention to long-term implementation strategies. PRACTICE IMPLICATIONS: Long-term implementation of advance care planning requires involvement of the whole organization and a continuing support system for health care professionals.